Symptomatic: A Medical Mystery Podcast – Episode Summary: "Case #17: Every Cure Pt.1 (Dr. David Fajgenbaum)"

In this compelling episode of Symptomatic: A Medical Mystery Podcast, hosted by Lauren Bright Pacheco, listeners are introduced to the harrowing yet inspiring journey of Dr. David Fajgenbaum. This episode delves deep into David's battle with Castleman Disease, a rare and aggressive condition, and his relentless quest to find a cure not only for himself but for others suffering from similar afflictions.

1. Early Life and Aspirations

David Fajgenbaum's story begins in Raleigh, North Carolina, where he grew up as the youngest child in a dedicated family. His parents, immigrants from Trinidad and Tobago, instilled in him the values of hard work and perseverance.

[01:36] David Fajgenbaum: "I wanted to play quarterback, and I wanted to play Division 1 college football. That was like my first dream. And that is all I could think about for about a decade."

From a young age, David demonstrated exceptional dedication, becoming a star high school quarterback. Inspired by his father, an orthopedic surgeon who worked with the North Carolina State Wolf Pack, David aspired to excel both academically and athletically.

2. Impact of His Mother's Illness

David's life took a dramatic turn during his freshman year at Georgetown University when his mother was diagnosed with brain cancer. This pivotal moment not only altered his personal trajectory but also fueled his passion for medicine.

[04:45] David Fajgenbaum: "It completely shaped my desire to become a doctor... this is what I have to spend the rest of my life doing."

Witnessing his mother's courageous battle against cancer ignited David's commitment to alleviating suffering and finding effective treatments for debilitating diseases.

3. Medical School and Onset of Symptoms

While pursuing his medical degree at the University of Pennsylvania, David maintained his dedication to physical fitness, earning the nickname "the Beast" for his athletic prowess. However, during his third year, unexpected and severe health issues began to surface.

[08:22] David Fajgenbaum: "Fatigue became this fatigue that I'd never experienced before... I knew something really bad was happening."

Symptoms such as extreme fatigue, lumps in his neck, and fluid retention signaled that something was amiss. Despite his medical knowledge, David struggled to comprehend his own deteriorating health.

4. The Diagnostic Odyssey: From Lymphoma to Castleman Disease

David's rapid decline led to multiple hospitalizations, where a series of exhaustive tests failed to pinpoint the exact cause of his symptoms. Initially suspecting aggressive lymphoma, the eventual diagnosis revealed a rare form of Castleman Disease.

[14:09] David Fajgenbaum: "I thought, maybe it's not autoimmune disease. But none of the autoimmune disease tests were coming back."

Castleman Disease, characterized by an overactive immune system, was both a relief and a new source of uncertainty for David and his family. The rarity of the condition meant limited treatment options and a bleak prognosis.

5. Struggles and Support During Hospitalizations

Throughout his battle, David faced multiple relapses and aggressive treatments that took a significant toll on his body. The unwavering support from his family, particularly his wife Caitlin and his friend Grant Mitchell, played a crucial role in his fight for survival.

[16:37] Grant Mitchell: "I couldn't hide how horrifying it was to see him in that state."

The emotional and physical challenges were immense, but David's determination to honor his mother's legacy and his own commitment to medicine kept him pushing forward.

6. Pursuit of Alternative Treatments and Research

After exhausting standard treatment avenues, David embarked on a daring plan to test experimental drugs on himself. His research led him to sirolimus, an MTOR inhibitor, which showed promise in controlling his disease.

[25:12] David Fajgenbaum: "What if there's some other drug out there that wasn't made for Castleman disease... could save my life?"

This approach was unconventional and fraught with risk, but it exemplified David's innovative spirit and refusal to succumb to his illness.

7. Turning Point: Achieving Remission

David's experimental treatment with sirolimus marked a significant turning point in his battle against Castleman Disease. After enduring multiple relapses and aggressive chemotherapies, this newfound therapy brought him into remission.

[37:02] David Fajgenbaum: "It's because we connected on that last one that I'm still here and that now I can continue to pursue this for other people."

The successful remission not only saved David's life but also paved the way for future research and treatment protocols for Castleman Disease.

8. Legacy and Continued Mission

David's journey didn't end with his remission. Inspired by his own experience, he founded the Castleman Disease Collaborative Network (CDCN), aiming to connect researchers and accelerate the discovery of effective treatments.

[27:17] David Fajgenbaum: "Can I figure out what's going wrong in my body and then can I figure out, is there a drug that's already FDA approved for some other disease that might actually be able to be useful for my disease that I thought could save my life?"

His proactive approach highlights the critical importance of patient-led research and the potential of repurposing existing drugs to tackle rare diseases.

9. Personal Reconciliation and Future Outlook

As David regained his health, he and Caitlin found solace in their rekindled relationship, culminating in their wedding—a testament to their resilience and unwavering support for each other.

[35:05] Caitlin: "It was so powerful... We had already been through it. It just meant so much to us."

Looking ahead, David remains committed to his mission of finding cures for rare diseases, driven by his personal experiences and the lives he touched during his struggle.

Conclusion

"Case #17: Every Cure Pt.1" is a profound narrative of survival, love, and the relentless pursuit of medical breakthroughs. David Fajgenbaum's story underscores the power of human determination and the impact one individual can have on advancing medical science. His journey from a hopeful athlete to a medical researcher fighting a rare disease offers both inspiration and a call to action for continued innovation in healthcare.

Notable Quotes with Timestamps:

• [00:04] David Fajgenbaum: "I'll never forget my doctor walking into the room and saying, David, your liver, your kidneys, your bone marrow, your heart and your lungs are shutting down."

• [04:45] David Fajgenbaum: "It completely shaped my desire to become a doctor... this is what I have to spend the rest of my life doing."

• [09:11] Grant Mitchell: "A priest came in and read him his last rites. And David, what? You're not going to die."

• [25:12] David Fajgenbaum: "What if there's some other drug out there that wasn't made for Castleman disease... could save my life?"

• [37:02] David Fajgenbaum: "It's because we connected on that last one that I'm still here and that now I can continue to pursue this for other people."

About the Hosts and Contributors:

Symptomatic: A Medical Mystery Podcast is produced by Ruby Studio from iHeartMedia, with Lauren Bright Pacheco as the host. The episode was executive produced by Matt Romano and Lauren Bright Pacheco, with post-production by James Foster, and research conducted by Diana Davis.

Looking Ahead:

In Part 2 of this series, listeners will follow David's continued efforts to combat Castleman Disease as he aids another patient, Gary Gravina, highlighting the ongoing challenges and triumphs in the fight against this elusive disease.